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Tuesday, 13 May 2014

Noticing the signs...and the singing

I was interested to read an article recently about how singing can help babies development, but also slightly annoyed because we all knew that anyway. It got me thinking about how my experience was so different though, and how these generalised articles on language development can put the blame on a parent's doorstep if your child's language is delayed. It feels terribly unfair when you are a parent who, like most, works so hard at being a parent. I can report that I did sing to my child, pretty much constantly, as I did with my eldest daughter who has no language delay. I also read stories, talked constantly and did not sit her in front of the tv 24/7. She has a differently wired brain which has garbled the language and memory route and leaves her like a beginner in French class, cluelessly smiling at what you are saying and replying 'bonjour' or 'ou est le chat?' for misunderstood questions.

And so what were the signs? Not singing songs back was one of them. Whilst my eldest daughter would want a story repeated over and over, my youngest wouldn't repeat words or phrases back, however she would spend a long time with visual and sensory pleasures such as food (think Close Encounters of the Third Kind with mashed potato) and drawing. Her art work is very good and she can draw a picture to tell a thousand words.

So I thought I would flag up some of the signs I noticed as a baby that point more to a language disorder and SLI than to other problems. SLI is specific language disorder - specifically language - so her physical and mental development was perfectly normal if not advanced, up until the age of 1 1/2 - 2 years old. She responded early to smiling, soft toys, settled herself well (she was a master at getting herself to sleep) and started crawling and walking very early. When the time came to repeat words though I noticed she didn't seem to be as quick to develop. Of course you don't want to (and shouldn't) jump to conclusions. My eldest daughter was singing Old Macdonald's Farm at about one and was hilarious in supermarkets by singing at the top of her voice in her buggy. I'm picking up Rice Krispies, she's full soprano "wak wak ere anna wak wak der...." she loved to sing! My youngest didn't do this. She worked out her puzzles quickly, she ate well and her motor control was brilliant (especially when feeding herself!) but she didn't seem to repeat words in the same way. I remember her first sounds were similar, but words were more difficult. When she pointed at the fridge magnet of Tigger and Pooh, she would say something that didn't sound at all like 'tigger'. So I would repeat it, but instead of repeating at Tigger, she pointed to Eeyore and said 'gg'. I didn't jump to conclusions, and no-one should, but at her 2 year development check I started asking questions.

Her behaviour had become quite manic and she would run around a room in a place she wasn't familiar with, it was different to others, and you couldn't calm her down with words and soothing talk. At the development check her language development came out at 15 months whilst her social and physical development was at 4 years old. There was a delay with her language there was no doubt, however she didn't display common signs of autism spectrum disorder such as not giving eye contact, social problems and understanding facial expression. I must at this point put a disclaimer - I am not suggesting that another child is or isn't on the spectrum, I am not even suggesting that at some point a different professional might give my child a diagnosis of an atypical type of autism because it is a huge spectrum and I am not a specialist. I am just saying that in order to treat my child's additional needs we had to focus on her language needs, early intervention and essential speech and language therapy. She doesn't have ADD/ADHD, sensory needs or severe behavioural problems. She does have low level anxiety and frustration. She doesn't do things repetitively, taken everything literally or need strict routines. She does like to know where she is sleeping and where she is going, because her concepts of time are so erratic.

As parents we always have to have one eye on the development and one eye on the child. My child did not develop in the same way. At playgroup she would run around and find large crowds stressful, mainly because they were talking to her and she didn't understand. It really started to flag up at 3, but at that point the Speech and Language team discharged her 'because it was too soon to know'. I can't tell to this day if the policy was well meaning or if I was being fobbed off, but it took a couple more years of struggling before I took her to a private speech and language therapist and found out she had a moderately severe language disorder. Armed with some evidence I proceeded to bash it over the heads of anyone that would listen and she was finally officially diagnosed around the age of 5.

There is support out there but it's so hard to get sometimes and with a diagnosis like SLI, which is still largely unknown, it can feel like an uphill struggle trying to get people to understand what's going on.

When she got the right support for her speech and language and was given positive rewards, her behaviour changed. Her anxiety levels went down and she could cope with those environments but before that it was so incredibly difficult. We were lucky. We got a statement of special needs and we had supportive schools. We were lucky because her impairment is specific so in a lot of ways she can negotiate life, just as if it's in a foreign language. We were lucky because she is healthy and happy and has the ability to learn. But I know if I don't keep vigilant and get the right balance of support to independence it's going to be a struggle and I have empathy for all the children and parents out there who are struggling from day to day, or who don't know why their child is behaving in the way they are.

So back to singing. For my daughter 'Old Macdonald's Farm' wasn't an option - she could do the animal noises, but could never repeat/remember the words. As she got older she would pretend to be a singer with a microphone and made up her own songs, because she could never remember the words to others. So whilst others were treated to renditions of Bieber or Taylor Swift, we had 'We are the rocking girls, we are the rocking girls, we like rock, we rocking, yeah oooohhh bay-by' It was very sweet but then she couldn't remember the words she had just made up, so the lyrics changed.

At Christmas Carol Concerts this meant she couldn't repeat the words to any songs. By the age of 5 we tried patiently with Rudolph the red nosed reindeer and finally got to the point where she could do the title and that part of the chorus. Sadly this would be the Carol Concert at school where she was taken out because her teaching assistant got stressed and thought her fidgeting meant she was about to have a meltdown. The poor thing thought it was because she was bad at singing. It's at times like that you know your child has additional needs, but the people around her don't understand what they are.

You know your child has additional needs when the local posh nursery throws her out for being too disruptive within 5 hours and the state school nursery says she can't cope. You know your child has additional needs when you are being brought in to 'talk' about incidents and they are 4. When they can't stand in line or sit on a carpet. When the school is lovely because everything's going well with one daughter, and it's a road to hell because everything's going wrong with the other.

After the incident at the concert I raged against the machine (school) and drove her off to a private speech and language assessment. I presumed it would be the first of many diagnoses - that it would be language delay plus Adhd or something similar. It came as a shock to find out the delay wasn't just a delay but a disorder. That she wouldn't grow out of it without therapist intervention, and that her subsequent manic and anxious behaviours were through frustration and fear at not being able to communicate with the world around her. After that I started to fight and now we have a situation where she has as much speech and language support as she can get on the NHS, in a mainstream school with a unit and she is learning. As usual I have one eye on the child and one eye on the future.

Sadly singing to my baby was never going to change my daughter's condition, but that would never stop me singing because if it make a difference or not, it still made her happy. Now she can read she learns the lyrics that way. Last Christmas (aged 7) she finally knew the words to her favourite song, Away in a Manger because she could read them! That's got to be something to celebrate - but I just wish the media wouldn't put parents down because their child has a language delay. It's not all about the singing and switching the tv off - it might be because they have an SLI and it's not been recognised.

2 comments:

  1. http://www.playingwithwords365.com/typical-speech-and-language-development/red-flags/

    This article posted on the Afasic facebook page today gives a really good idea of what red flags and signs to look for if you are worried your child might have a language disorder and is showing a language delay.

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  2. Found your blog recently and I love it! I shared this post on Twitter yesterday - it's such a great insight into the early signs of SLI. I have looked for a contact email address on your blog but can't see it - would you be interested in writing a guest post for us at www.speechbloguk.com - take a look at our site and if you're interested do get in touch with us via email on speechbloguk@gmail.com - we'd love to hear from you. Looking forward to reading more of your own blog too.

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